Guest Blog: Doug Atkins – Eight Days After Aortic Valve Replacement

Congratulations, Doug and family. I am the mother of John Turan, scheduled for surgery this week at Shands Hospital, Univ. of Florida, Gainesville. I read with enthusiasm all of the emails sent by patients, I feel like I am part of all of your famlies. Adam’s book has been a blessing to us too, the patient, John and his care team. I don’t know what we would be thinking without it.

What is the chest protector? Is it something that will be given to John at the hospital, or what? Can anyone explain?

Speaking for our whole family, Salud!, may you contine to recover happily.
We loved the family picture. God Bless.

Hi Mercy: Remember me? Sergio and Maribel (mitral valve replacement) I dont know if you entered again after you posted that you felt connected with us? did you? well if not let me resume here: EVERYTHING IS GOING TO BE OK with John, he is young and strong so be calm, I can´t tell you don’t worry because it is impossible but try to control you fear, think positive all the time, transmit him good feelings, they need to be calm and see everyone calmed around them, it’s like the flu he’ll catch it!!! One question: is he having symptoms of valve insuficiency? how did he found out he had a problem? just curious because my husband didn’t felt a thing before the surgery we founded out in a check-up!!! thank god! do you have surgery date? so we all here concentrate in sending him all our prayers and good thoughts!! Adam book is priceless, has he read it? I think is far more useful for caregivers which carry a heavy burden, for John is going to be a blink of an eye, for you 4 to 6 hours of pure adrenaline!!! My piece of advice when he goes to surgery don’t start thinking what is going on in the OR because I had a bad experience because I was thinking: now they are putting him on the ECC, now they are stopping the heart, now……and so on like if I really knew and then 3 hours later (when I thought he was in the middle of the surgery) a nurse called me and said: DR.Barragan wants to speak to you!!!!! can you imagine what I felt? hell!!! they took me to a family room all by myself and I waited there almost 20 minutes (the worst in my life) I thought he was dead, or he was having problems, something was really wrong it was to soon to speak to me!!!!! my hands were so wet that when Dr. came in the room I wasn’t able to shake his hand, and guess what? HE WAS PERFECTLY OK!!! the surgery was over quicker than they thought!!! see? I went to hell and came back with a brutal sweat!!!! so Mercy don’t count the hours, dont play doctor, just relax and wait ok? Send you a warm hug!

Ohh! sorry and for Doug and Heather: CONGRATULATIONS!!! welcome to your second chance!!! It is always good to know somebody else went through it and came out ok!! I know you did the Ross procedure but they still put you one mechanical valve isn’t it?

Hi Maribel, why did your husband have surgery when he didn’t have any symptoms? I have a bicuspid artic valve and after my check last year the cardiologist said to come back after two years for another check. I’m 44 and fairly strong but being a Brit in Japan I do get very nervous and worried at times.

Mercy and Maribel,
Thanks for the replies and I’ll respond to both of your questions.

1. I received the chest protector from Adam. He sent out an email before my surgery and I requested one to try. Not sure of his inventory, but he can at least point you in the right direction to get one. It was a huge help as it fits underneath your shirt and keeps it from rubbing the incision.
2. My pulmonary valve was removed and placed in my aortic valve position (in place of the bad aortic valve). A stentless porcine valve is then placed in the pulmonary valve position (not mechanical). There’s been alot of success with the use of the stentless porcine valve…even in the aortic valve position.

Hope this helps.

Take care,
Doug

Dear Maribel, Doug and Ari:

Thank you Maribel for your encouraging words of wisdom. I am a nurse and worked in ICU for many years, though never in open heart units. You can imagine what I can imagine! I try to remain thinking positive and when negative thoughts enter my mind, and sit down, center myself and pray for the Peace of the Lord. Then it happens: I am calm, the circumstances around me haven’t changed, but my attitude towards them has. I have to repeat that several times a day. For those who believe, this is the best piece of advice I can give now. John will check into the hospital tomorrow,tues, March 4, for surgery weds, March 5. We thank you with all our hearts for your prayers, I will continue to do the same for Sergio.

To Doug, thanks for the info on the chest protector, I will check with Adam.
I am also offering thanksgiving prayers for you and your beautiful family.

To Ari, John was born with a bicuspid aortic valve, and has been followed for that since it was discovered at about age 1. He is otherwise healthy and active, and has done everything, sports-wise, except jump out of an airplane (though at 18 he bungee jumped because he no longer needed our permission). About 2 years ago, he had an “episode’ pretty much like the one Adam described in his book happenning to him at the Mexican restaurant, except that John was in a meeting at work, and there was no getting out of being sent to the hospital for check ups. There, after 9 days of testing, he was told what we already knew, he also had a cardiac catheterization at the time, with a Swan-Ganz line insertion (measures different pressures in the heart and through the valves) during the procedure. He was then told to whatch out for symptoms and to do his next check up on time. When his second baby was born May 1/2007 she was sent to Univ. of Florida pedicatric cardiology dept. because they thought she may have a heart murmur (and since her father’s history). (see johnturan.home.att.net for stories and pictures on his blog).
It was then that they he was enrolled in the university’s Adult Congenital Heart Disease Program, where they follow patients from childhood on through–the baby was fine. This Jan, during his checkup at that program, an MRI revealed worsening of the aortic valve, and also discovered and aneurysm (a bulging of a blood vessel) at the ascendint carotid artery. It was time now to repair that as soon as possible. Just remember you are the CEO of your own healthcare. Make sure you get your check ups on time and are aware of what signs and symptoms to report. Asks questions, and seek answers even if involves getting another opinion.
Love to you all, Mercy, mother of John

Hi adam & all,

Adam I have found your site.

My mother whoz 65 years old, earlier under medical care (18 months) for high altitude related ailments, she was diagonised with clots in brain. Now doctors have suggested for arotal valve replacement, which should be done as soon as possible. My mom is short and currently weak.

Although she is willing for surgery in two weeks time, i am not sure what would be effect on her post operation, especially if she has to take anticogulation drugs, my concern is since she is already under medication for clots in brain, please guide me if you come across with a patient with clots in brain and successfully went thru AVR.

Regards
Murali

My partner had avr on thursday last week, He has had a few set backs and his heart wont beat regular on its own. He spent 3 days in intensive care and been placed in high dependancy unit now,there waiting another 6 days from today to check to see if normal heart beat will come back. They had more work to do when they got inside so they say, surgery took 10.5 hours???? I feel this was very long for what they have said has happened. We have had his files removed and no one speaks to you had to say we where taking it to the medical board through our family Dr to get answers. Most have still not been answered. He is wired up to external pacemaker and oxygen and loads of drips that we where not exspecting at dat 6. He is sitting up and breathing but has oxygen tubes still. He was hoping to be getting out of hospital on thursday but as exsternal pacemaker fitted this is no going to happen. We would not reccomend anyone get a heart valve surgery in Edinburgh, Scotland, UK at the Royal as the place is very dirty and the staff don’t care. Any Idea where do we go from here? Will he ever get any better than this now?